Hello Everyone,

Karen has now been in hospital for 4½ months. She is still being given IV feeding (TPN) and it continues to go well. However, she has still not been weighed and is not having her weight tracked on a weigh bed. Karen has not been moved to the gastro ward to a room that is big enough for her to be on a weigh bed to have her weight tracked.

Karen continues to also have J-tube feeding when able but her intake of this is very small and even this amount gives her severe abdominal pain and other symptoms.

An ME specialist has written to the consultant at St Marks Intestinal Rehabilitation Unit in support of Karen receiving remote setting up of home TPN while she is in the hospital she is in now (Conquest Hospital). This would avoid the ME being made worse by Karen travelling 100 miles to the unit and the things that being at the unit would involve.

St Marks have not yet answered any of Karen’s two sets of written questions that we sent in late February and early April to be submitted to them. They have also not yet replied to the letter we sent them in early April asking them to reconsider their decision not to give Karen remote setting up of home TPN.

Karen continues to be very stressed. She needs to go home with TPN and without the ME being made even worse.

Thank you so much to everyone who has signed and shared the petition and thanks to those of you who have left supportive comments. Also, thank you very much to those of you who have chipped in to promote the petition which helps us to gain more signatures. It is all much appreciated by us.

Please continue to tell people about this petition and continue to share it on-line.

Best wishes to you all.
Karen, Heather & Michael